Community Discussion Forum New to Niece was just diagnosed at 4 days old Reply To: Niece was just diagnosed at 4 days old

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I guess my main question is this: As long as my niece follows the low phe diet, how different will her lifestyle be compared to those who don’t have the disease? Also, what are some of the major characteristics of a person with PKU (even if they are treated with the correct diet)?
Hi, nFirst let me tackle your first question of how different your nieces lifestyle will be if she follows the diet. The answer is, not very. I come from a family of seven kids, myself and my 8-year-old sister both have PKU. We eat alittle differently then our siblings, have to drink our special formula, check our blood once a month and go to our PKU clinic either every 6 months or once a year. Besides that we are just the same as our siblings. We both take dance classes, the two of us can basically get alone with anybody we meet, I’m getting good grades in school and I’m hoping to go to college someday. So I’m not much different then any other teen and neither will my sister.
For your second question there really aren’t many major characteristics of a PKU person if the diet is followed. Although, it is common for PKU people to have blonde hair and blue eyes, or just a lighter complextion then their siblings. I don’t have blonde hair or blue eyes but I do have lighter hair (pretty close to blonde) and skin then my siblings. Besides that, there really are no other characteristics.
I have to admit though, I am alot better in math then my older brother and older sister. Lol, maybe that’s because at a young age I started counting the phes in my foods and measuring my foods.
I hope this helps! nBreanna 16 w/CPKU

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